Off Limits

Yesterday Luke was very fussy. Of course it was his own fault, he just had to wake up at 5:30am and have a party in his crib. He thumped, kicked, laughed, and played on and off until 8:30am...when I think he went back to sleep. At least he was quiet for at about 30 minutes. Then of course around 9am, he was up and partying again. So we got him up, and boy did that start a bad day. I’m sure I'm not the only one who has had to deal with a fussy kid.


During one of his “fussy” fits yesterday, I was doing dishes and all of a sudden the loud screaming went completely silent…never a good sign. I poked my head into the living room and what was Luke doing? Standing up, with one hand on our end table and one had on the recliner!! I stopped him just in time from throwing everything in reach on the floor, including books, a pacifier and nail clippers.

As much as I wanted to scold him, I had to be happy and excited instead. This is the second time in two days time that Luke has pulled himself to standing all on his own!! At 28 months old, and battling hypotonia (low muscle tone), this is quite a feat. Although since he seems to be finally figuring all this out, I may need to rethink the location of many things.

The cheering session

Anyone else with a special needs child will understand this. I find myself cheering when Luke does something other parents would get upset with their kids on or even be worried. The other day a friend went with us (Luke and my 4 month old daughter Faith) to Culver’s. When I put Luke in a highchair and told my friend I would be right back, I was going to order our food. She asked, “Will he crawl out?” She was worried he might try and that she needed to stay real close to him. It was then I realized how different life with a special needs child is. I told her “no, he can’t and if he did I would be so excited!” You see, where most parents would worry about the possible fall, I found myself wishing he would do it!


Sometimes I hear parents reprimand their child for doing something like running around a public place or climbing up on a stool or countertop, and I think “if only Luke would do something like that, I would be so happy.”

So I find myself looking for the little things, like the other day Luke pulled himself up all by himself, at the age of 27 months. Of course, he doesn’t perform on command so I have yet to see a repeat performance. But I am looking forward to him being able to reach all those “off limits” items on our end tables in the living room. Then I can join other moms who say “no, leave the remotes and mommy’s books alone”. Aaahhh….the dreams of a “special mom”.

Sense of Humor

Do you ever wonder what in the world could be going through your Childs’ head? I know I have had that thought millions of times over. Luke finds the strangest things so funny. If you want to get him to laugh, find a ball and bounce in on the floor. Yep, just bounce it. If you really want to make him laugh, find a soft ball and instead of bouncing it on the floor bounce it into Luke. He loves it!! I don’t get it. I pray he doesn’t grow up to be one of those kids that goes to kindergarten and at recess on the first day finds one of those kick-balls and decides to throw it at the teacher to watch it bounce, just because it is funny. Surely all boys love to do this and he’ll outgrow it, right?


Other times he decides to throw his Lego’s against the wall, and of course that is extremely funny. I try to show him that Lego’s are for BUILDING things….but no, they are for throwing of course…silly me. What was I thinking, of course you throw them!

The magic door

I think one day Luke will grow up to build or design doors. I’m sure people like that are out there. How else would we have those automated doors, right? No matter how small or large the door, Luke will stop in his tracks to watch a door. When we go to therapy in Peoria, IL they have automated doors. So once we step in the magic place they slide right open and Luke just stops and stares, like they might never close again or something. Of course they can’t close until we move, and he won’t move until they close. You can see my problem. It is a never ending cycle. Of course, where we go has to have two sets of sliding doors in a row. So once we get through the first set, we aren’t done yet. So on those days you can see me putting pressure on his back saying “Come on, let’s go. We have to go inside in order to see them close.” While doing this I am usually juggling at least one diaper bag, if not two diaper bags and our 5 month old daughter in her infant seat. I tell you, after a while she gets so heavy I don’t have a lot of patience for those doors.


That is one of the worst cases we deal with. But the doors don’t need to be automated to get his attention. Whether it is church, Culver’s, our the other therapy place we go in Bloomington, IL or even at home; doors are the highlight of Luke’s life. Sad, but true.

On a nice day I open the main doors (leaving only the screened storm doors) in the front and the back of the house. It will occupy him for hours crawling from one door to the other. First, he’ll play with the front door until he accidently shuts it and can’t get it open anymore. Then, he’ll crawl to the back door and do the same thing there. I have learned that if I don’t want to keep opening the door for him, I put one of those small 8” diameter plastic balls in-between the main door and the storm door. That way when Luke tries to shut the door it just bounces back at him. And, of course his reaction is to laugh. And I mean laugh each time the door bounces back, it never ceases to be funny. Aahh…the simple things in life.

The Simple things

Today our PT focused on Luke’s ability to bend the knee. You would think that would be rather simple. But for Luke it is a great challenge. He must learn to not overcompensate for his weak muscles. It is much easier to lock out his knee than to bend them. Now that he is doing well walking with a walker, we are going to the next step, being able to bend and the knees and pick something up off of the floor. Luke is also smarter than most take him for, he knows someone has a hold of his hips, so what does he do? He fakes you out, just when you think he is bending just like you want and he will pick an object up he lifts both legs in the air expecting someone to catch him. Sometimes this is accompanied by tears of frustration, and other times he laughs and laughs…because of course it is the funniest thing ever!


Then we tried to walk down stairs. Once again something that seems so simple. But you should try it when locking out your knees…not so easy. For some reason he kept bending one knee and almost kicking it, but would lock out the other. It was like he was saying “no way man, I’m not doing that!! Are you crazy?” So the whole experience was more like he did a scoot-hop combo (while crying of course) and would eventually wind up on the step below him, landing with a THRUMP!! Then he would cry some more.

Can you guess what our new homework is for this week? Yep….stairs. Oh Joy!!!

Mystery solved!!

Now I would love to take credit for finding the famous Sippy Cup, but as I said before I was out-smarted. So, of course my husband found it!! What isn’t fair is that he wasn’t even trying! He was simply bending over to get something off the floor to throw it away and WALLA!!!!! Sippy cup found!!! It was half under the back of the couch (which is up against the wall). In my defense it was in a location hard to see and where we also keep two safety gates so we can go on “baby lockdown” when trying to control traffic of our munchkins. If nothing else, my husband is a great finder of the unfindable (my new word), kind of like a dog with a bone….just won’t give up. Men, what would we do without them?

Kiddy Songs

Now most moms spend their time with their babies and toddlers singing “Itsy Bitsy Spider” or “The Ants go marching”, for fun. But as a special mom, I have a special use for these songs.


Ever since Luke was born he loved to hear me sing. We learned early on to play the radio to help him sleep, after all my voice could only hum so many songs. It got to where I would make up my own words to “rock-a-by-baby”, and I could only come up with so many words.

Now instead of trying to keep him asleep, I try to keep him happy. So when we go to draw blood at the hospital, what do we do? Sing “Itsy Bitsy Spider”, of course! When he throws a tantrum, what do I do? I would sing, but he can’t hear me over his screams…so I make lots of noise like bouncing the big exercise ball on the floor (which vibrates the whole house). What does Luke do? He laughs…of course…until I stop…then he cries.

And, when we work on walking and Luke gets tired and upset? We sing!! Of course!! And not the traditional beats, but to the beat of however fast Luke is walking….so sometimes “Itsy Bitsy Spider” sounds more like “IIIIttttsssyyyy….Bbbbiiitttsssyyy…..SSSSSppppiiiidddeeeerr…cclliimmmbbbeeedd….” You get the idea. Personally I like “The Ants go Marching” best when working on our walking….although I usually make up a lot of verses with silly things because I don’t know all the words. But the beat is perfect…sometime we take it slower….but it works!! That is all that matters.